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. 2018 Mar 28;13(3):e0194030.
doi: 10.1371/journal.pone.0194030. eCollection 2018.

Motivations of women in Uganda living with rheumatic heart disease: A mixed methods study of experiences in stigma, childbearing, anticoagulation, and contraception

Andrew Y Chang  1 , Juliet Nabbaale  2   3 , Haddy Nalubwama  4 , Emmy Okello  2 , Isaac Ssinabulya  2 , Christopher T Longenecker  3 , Allison R Webel  5
Affiliations

Motivations of women in Uganda living with rheumatic heart disease: A mixed methods study of experiences in stigma, childbearing, anticoagulation, and contraception

Andrew Y Chang et al. PLoS One. .

Abstract

Background: Rheumatic heart disease (RHD) is a leading cause of premature mortality in low- and middle-income countries (LMICs). Women of reproductive age are a unique and vulnerable group of RHD patients, due to increased risk of cardiovascular complications and death during pregnancy. Yet, less than 5% of women of childbearing age with RHD in LMICs use contraceptives, and one in five pregnant women with RHD take warfarin despite known teratogenicity. It is unclear whether this suboptimal contraception and anticoagulant use during pregnancy is due to lack of health system resources, limited health literacy, or social pressure to bear children.

Methods: We conducted a mixed methods study of 75 women living with RHD in Uganda. Questionnaires were administered to 50 patients. Transcripts from three focus groups with 25 participants were analyzed using qualitative description methodology.

Results: Several themes emerged from the focus groups, including pregnancy as a calculated risk; misconceptions about side-effects of contraceptives and anticoagulation; reproductive decision-making control by male partners, in-laws, or physicians; abandonment of patients by male partners; and considerable stigma against heart disease patients for both their reproductive and financial limitations (often worse than that directed against HIV patients). All questionnaire respondents were told by physicians that their hearts were not strong enough to support a pregnancy. Only 14% used contraception while taking warfarin. All participants felt that society would look poorly on a woman who cannot have children due to a heart condition.

Conclusions: To our knowledge, this is the first qualitative study of female RHD patients and their attitudes toward cardiovascular disorders and reproduction. Our results suggest that health programs targeting heart disease in LMICs must pay special attention to the needs of women of childbearing age. There are opportunities for improved family/societal education programs and community engagement, leading to better outcomes and patient empowerment.

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Conflict of interest statement

Competing Interests: Author C.L. has financial support from the Medtronic Foundation (Grant FY13-000406) for the submitted work, but the funder had no role in the study design, data collection, analysis, interpretation, writing of the paper, and decision to submit for publication. This commercial affiliation does not alter our adherence to PLOS ONE policies on sharing data and materials. All authors report no other competing financial relationships with any organizations that might have an interest in the submitted work; no other relationships or activities that could appear to have influenced or benefited from the submitted work. None of the authors have served or currently serve on the editorial board of PLOS ONE.

Figures

Fig 1
Fig 1. Focus group themes.
List of the major themes and sub-themes encountered in the focus groups.
Fig 2
Fig 2. Reproduction as a balanced risk.
Schematic depicting focus group theme of external and internal factors driving or inhibiting reproductive intent in women of childbearing age in Uganda.
Fig 3
Fig 3. Opportunities for improvement.
List of sub-themes encountered in the focus groups detailing opportunities for improvement in the current RHD healthcare system.
See this image and copyright information in PMC

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